Blog 61: Improving the picture

Its 3pm at Butha Buthe cerebral palsy clinic and I haven’t had anything to drink or eat since 7.30am this morning or even been to the toilet. In fact, I have barely moved since I arrived here this morning and started assessing the children. As well as some follow up appointments 16 new children have turned up, none with their Bukana (small medical record booklet) and most accompanied by care givers or grannies who don’t know the child’s date of birth let alone what medication they are on. All have come by public transport and some from a long distance away, which is why I am soldiering on without a break, so they can hopefully get back home before dark. 

My assessments are getting shorter and are cut down to the bare minimum, whether the child can move, sit up and needs assistive equipment, particularly wheelchairs or APT chairs. Many of the children have a type of cerebral palsy called dystonia, causing uncontrolled movements, making them to push back into extension, so it’s very difficult for them to sit up. There is a sad 6-year-old boy with sunken eyes, limb deformities, terrible contractures and callouses from where he has been dragging himself across the floor, a one-year-old girl who is blind and continually rubs an empty eye socket, lastly a very forlorn looking three-year-old girl who walks in with a slack jaw and her mouth open. 

 

I look down her throat and see a gaping hole revealing an untreated cleft palate. “Does she have a problem eating” I ask her granny. Granny says that the food sometimes comes out her nose and that she has taken her to both major hospitals in Maseru but neither offered her treatment or a referral to South Africa. Since she doesn’t have the child’s Bukana I am unable to verify what has gone on, but this is a common birth defect which I have never seen untreated before as in the UK it usually receives corrective surgery as soon as possible. 

 

I eventually finish and leave with a long list of children who need APT chairs and wheelchairs. A lot of the equipment required is for quite complicated problems and I don’t know if I can supply it all. The supply and demand for assistive equipment between the three districts is like a giant jigsaw in my head. I am constantly adding new pieces as I bring in new wheelchairs and APT chairs, while I swap around old pieces as children grow out of equipment and I take it for repair and then give it out to children that it fits and can benefit from it. 

 

I return to Maseru, trying to focus on what I can offer these children, and not be overwhelmed by the lack of health care available in Lesotho. I have now assessed hundreds of children with disabilities but often it’s only the start of an uphill battle to get them the treatment they need, especially if they require referrals for hospital treatment. My experience of government hospitals has not been good following the neglect and appalling treatment of Sello at Motebang hospital when he was admitted for grade four pressure sores. More recently taking two children with muscular dystrophy to Q2 hospital in Maseru the most pressing question the orthopaedic doctor, Dr M, wanted to ask them was if they believed in Jesus. Fortunately, they both replied yes and received his blessing, but I was hoping for a more objective approach.

 

We return to see Dr M with a seven-year-old with metal work in both legs after corrective hip surgery in 2021 left her with severe leg shortening and constant pain. Ntseliseng goes with the girl while I accompany an older child to a different clinic. I get back to the car and there is still no sign of Ntseliseng, and I call her to find out that its mayhem at Dr M’s clinic and she’s no idea what happening. I look up and see the very man walking by the car and heading down a dusty path into the trees. “He’s right here” I tell her and chase after him. He looks surprised to see me and says he won’t be long and continues towards the trees. I’ve no idea if he’s going to talk to them, or perhaps imbibe in something reviving, certainly his gait is rather wandering. After a brief sojourn he returns to his clinical duties and Ntseliseng manages to grab him to look at the unfortunate 7-year-old. He gives her his blessings but more practically an X-ray referral.

 

Now armed with the X-ray and with Ntseliseng as back up, I take the girl to Queen Mamohato memorial hospital where she had the original operation. She was supposed to be followed up soon after this, but her mum and dad divorced, and dad took the children to stay with him and refused mum access. Mum eventually managed to kidnap her daughter and took her back home but two years later after the originally operation there has still been no follow up of her surgery. I fear things have gone badly wrong with the internal fixation of her bones causing her present deformity and pain. 

 

Queen Mamohato hospital is relatively new and was built in partnership with private sector funding. Unhappily the government failed to meet its funding side of the bargain and after a few years the private sector withdrew its support with subsequent administration chaos. Record keeping now seems to be handwritten and rather unreliable. After queueing for two hours, we finally get to see a doctor who decides the girl not his problem and should be passed onto the doctor who did the original operation and is presently in theatre. Her X-ray is on a CD and the doctor can’t open it to view so he instructs a junior doctor to find a computer to reveal its contents.

 

Another hour passes, nothing has happened and worryingly we are approaching lunch time and the danger zone of post lunch inaction. I press for answers from one of the pseudo doctors who is managing to look busy without doing anything. The art is to sling a stethoscope around your neck and go in and out of various examination rooms which have no patients in them. She eventually comes back with the X-ray picture on her phone, but it is now lunch time and I wonder if all is lost. I give another hard stare to the pseudo doctor she passes; we have now been waiting for over 4 hours with a seven-year-old in a wheelchair. 

 

Suddenly she calls me into the office and declares she has decided to admit the girl onto the ward along with the chilling news that we must stay with her until mum arrives. Fortunately, Ntseliseng manages to get hold of mum who is at work, and she agrees to come immediately and bring the necessary supplies for what might be a long stay in hospital. It takes her another hour and half for her to come. I make good use of the time by washing the girl’s wheelchair with my face mask, as its rather muddy and there are no paper towels by the sink or toilet paper in the toilet. I also ask the ladies on the ward desk if they know if the hospital does cleft palate operations. They direct me to a surgeon in an office who says know they don’t but occasionally an organisation called “Smile Train” comes to the hospital with specialist doctors who will try and operate on as many children as they can who are on the hospital cleft palate list. He has no idea when the next Smile Train will arrive, but I need to get the three-year-old on the list to see if the team give her the treatment she desperately needs. 

 

Mum arrives and both Ntseliseng and I breath a sigh of relief. I warn mum not to let the hospital staff take her daughters wheelchair away which we have supplied. I doubt if there are many, if any, children’s wheelchairs at the hospital and we are unlikely to see if again if staff decide to borrow it for another child. It feels like we have got through a labyrinth of appointments to get the girl this far, but she has yet to have the operation and find out whether all the problems that have accumulated over the last two years from her previous operation can be sorted. As to whether the three-year-old will get the surgery she needs for her cleft palate this remains another unknown. 

 

The following week I am back down in Butha Buthe following up children and giving out equipment. I have a small, blue recycled wheelchair for the sad 6-year-old boy saw in clinic a few weeks ago. It’s been rebuilt out of two broken wheelchairs, and I hope will give him some mobility, independence and position him better to reduce his contractures. He lives in a single room in a squalid area of poor housing along with an aunty and two of her children. I explain a little about the wheelchair and ask aunty to put him in it. He is sitting on the bed, and she grabs him by the arm and drops him in the chair like a sack of potatoes. She clearly has no affinity or liking for the boy.

 

With gentle encouragement he soon learns to move the wheelchair about on the small area of linoleum floor despite the contractures of his hands. I praise him and he cracks the smallest of smiles. I give out some soft night splints to try and stop his contractures getting worse, tell him to keep practicing using his wheelchair and we leave. When we are back in the car Mme Maja tells me that aunty is very angry with the mother who left months ago to supposedly find work and she has barely made contact since then. The dad left years ago and now the boy has nothing and no one, just an aunty who resents him, a painful, contracted body that doesn’t work and life in a small dark room sitting on a bed with no hope and little future. It heart breaking and I can only hope the wheelchair gives him a chink of light in the darkness.

 

We move on and I give out two further wheelchairs to children who are in wheelchairs which are much too small for them. Since they both spend all their day in their wheelchair it’s a huge improvement in their quality life and I can recycle both the wheelchairs they have grown out of. After a conversation with our tech back at the workshop I pick up three more broken wheelchairs collected from social development. I feel positively rich as I drive away with all the bits of wheelchairs clanking in the back of the car while I work out which children will benefit from the wheelchairs when they are repaired. 

 

Added to the second-hand wheelchair bonanza are the 15 new chairs I have brought in from South Africa so far this year, some of them adapted with the desks we make to add extra postural support for those children who need it. Meanwhile the workshop team are cracking on with all the APT chairs that are currently on order. They are now producing chairs much more efficiently and of much better quality due to the training they’ve received, the facilities the new workshop offers and getting the students at Abia involved in the production of the chairs. There’re are no easy solutions for the huge health challenges of Lesotho that’s for sure, but we are putting in some of the pieces of the health care jigsaw puzzle where we can and slowly improving the picture. 

 

Update: The 7year old girl has been for her operation today. 

We are pressing for the little boy with the blue wheelchair to be admitted into a residential school for children with disabilities where we feel he will receive better care and a future 

Blog 60: The sounds of March

“Whack”, I wince as much as the child does whose fingertips are being canned for being late for school.

“Ntate what exactly is happening this morning when the British High Commissioner arrives?”

He pauses before replying as another child runs the gauntlet and tries to slip inside the school gate without being noticed. Unfortunately for the child the teacher is not distracted from his early morning duty to punish unpunctual miscreants

“Whack”, “Don’t worry Mme Jan it will all be sorted I think” 

“But the visitors will be arriving from 10.30am, and nothing has been organised yet”

“Whack”, “Don’t worry Mme Jan it will be okay”

 

My stress levels are rising. The British High Commission (BHC) will shortly be arriving to open the new APT and wheelchair training centre which they funded with a grant award, and we’ve built at Abia high school this year. I asked the high school principal to organise an appropriate list of guests and media for the opening but it’s all very last minute (like I was sitting in her office yesterday while she was on the phone to the ministry of education suggesting the minister might like to come giving him less than 24 hours’ notice)

 

The APT centre is all decked out with a red ribbon to cut at the entrance, a flower bed planted and the APT chairs on display, while the school is looking like a war zone. The school “hall” has a roof and a concrete base but no walls and is filled with broken desks and discarded bricks. I decide to calm myself by running over to the primary school to make sure the primary principle is coming, who I fear is another victim of the last-minute guest list. She is in her office and says it’s too late for her to come because she is in her ordinary clothes, and it would be too shameful for her. She sees the disappointment on my face, “Okay Mme Jan I will come but only for you” It’s a big deal and a big sacrifice because Basotho ladies usually spend hours doing their hair and clothes for such an occasion. 

 

Relieved I run back to the High School to find at 9.30am it was decided to cancel all lessons and hundreds of students are running around everywhere, moving the broken desks from the hall, bringing in seats for everyone and digging and tidying the grounds like a horde of ants. Remarkably we only start 15 minutes late at 11.15am and everything runs quite smoothly. The BHC makes a speech, cuts the ribbon to the workshop, admires the chairs, watches a bit of live action APT and meets the children. 

 

Euphonious African singing fills the air as we enter the school “hall”. The few glitches go unnoticed as the school choir mesmerises all the visitors with their wonderful harmonies and dancing. The African skies are framed perfectly by the roof with no walls and the BHC are so impressed by the choir that they invite them to be part of the commonwealth choir celebrating the Kings coronation in May. Hurray! What a result! Not only has the BHC project has been successfully completed but Abia High School are on the map. No stress at all 

 

https://www.youtube.com/watch?v=a_VZ-2hH_Po

 

 

The roll of thunder, crack of lightening and lash of heavy rain accompany us we carry an assortment of food parcels up a slippery hillside. I have thought to give the other two ladies extra clothes but forgot to change my flip flops before coming out on this mission. I wonder if I will break my ankle or get struck by lightning first.  

 

Yesterday I took a girl home who I found out on the road in her wheelchair being pushed by the care father at Saint Angela. She was sick and being sent home because Saint Angela had no food or medicine to give her. Today her cousin has returned and has been waiting outside my flat to tell me there is no food at the girl’s house and she hasn’t eaten for the last 24 hours. I’ve got the car as close as I can, but the track runs out and we are now on foot. Yesterday the mother came to meet us and carried her daughter on her back for the final part of the journey, so I haven’t been to her home before. 

 

A black tin shed appears out of the apocalyptic storm clinging onto the hillside, and we crash through the door before getting eaten by a snarling dog. The girl is in bed with her mother, they are both weakly coughing under the covers. The girl has TB, and it sounds like the mother does too. TB, disease associated with poverty and HIV, both rife in Lesotho. I have brought enough food for about a month, after that I don’t know what will happen. Many of the children at Saint Angela live in equally challenging circumstances and it would present me with a dilemma if all their relatives start turning up on my doorstep asking for food. For now, the girl can have a hot meal for the next few weeks and the immediate crisis is solved. We leave in the rain, its dark by the time I get back and just another day in Lesotho   

 

Thud, thud, thud the sound of earth on wood, earth on a coffin. Mournful singing surrounds the grave of Sello who at last has been laid to rest. He has been dead for some weeks, but dad was thrown into prison trying to cross the border with an out-of-date passport. The family have waited for the funeral until they could raise the fine for him to be released to attend his son’s burial. There are hundreds of people attending from the village as well as relatives. Funerals are big in Lesotho, and it seems like more money is spent on the dead than the living. I am worried about how this poor family will feed all these people, but Mme Maja tells me not to worry as they belong to the village funeral association who will pay for it. 

 

I feel numb and try not to dwell on what Sello suffered. At last, the grave is full of earth, the singing stops and there is only the sound of silence. The sounds of March and extremes of emotion are over. It’s time to move on to April.  

Blog 59: Legacy

 After being in Maseru for the last two weeks I finally manage to escape and dash back down to Leribe to pick up the pieces there. Top of the list is to see the boy with terrible pressure sores, Sello, who has deteriorated further and has been in hospital for the last week. It’s a long day as we go via South Africa to fix the car and pick up more wheelchairs. We get up at 4.30 am and must negotiated customs, a power outage, and some unpleasant lorry drivers, who are shouting at us and telling us we are in the wrong line to present our custom documents. It is the only line to present papers, but we are the only car, and the lorry drivers seem to think they can intimidate us and move up one place in the queue. 

 

Mahlomola is half the size of the aggressive fat lorry driver leading the pack. I feel myself getting angry and am tempted to confront the bully but don’t want to be crushed by the juggernaut he is driving. Just as we reach the front of the line, the vitriol psyches Mahlomola into turning around. Fortunately, the custom officer in the booth sees what’s going on and waves away the lorry drivers away and processes our documents. We are saved but by the time we get back to Leribe it is dark, and we are both shattered. 

 

I am up first thing in the morning to go to hospital and visit Sello. He has the heart of a lion, but from Mme Maja’s reports it sounds like his body has finally given up. He has pressure sores everywhere and has stopped eating. As I get ready, I receive a message from Mme Maja, Sello passed away around 6am and I am too late. He went through terrible suffering, and I feel relieved I don’t have to witness it anymore and he is finally at peace. We go to hospital to see how we help mum. Dad was working in South Africa and tried to make it across the border a couple of days ago, but his passport was out of date, and he was arrested and sent to prison. Now mum must do all the things that he would have organised as the head of the household. 

 

When we arrive, she is seeing someone from social development to arrange paying the hospital bill. We go to the ward. Sello’s small body lies on the bed under a hospital blanket. The ward doctor is tamping because she says his body has been there too long and that he should go to the mortuary. Mum wants him to go to the town mortuary, not the hospital mortuary, which takes a bit longer to organise. We leave the grumbling unsympathetic doctor and go into the room to spend a few quiet moments with Sello. I tell him I’m sorry I couldn’t do more and I’m glad he is now free to fly away from the body that tortured him. I imagine his spirit soaring into the blue skies, making beautiful patterns as it glides into infinity. 

 

We come out the room and mum appears, clearly running on automatic pilot. She still needs to organise the mortuary, so we go on an outreach visit and deliver a wheelchair to a girl and her delighted family. It’s all a bit surreal. By the time we get back Sello has gone to the mortuary, and we pick up mum to take her home. I park and our sad procession walk down the familiar overgrown path to the hut, mum marching resolutely in front, Mme Maja with her umbrella up to protect her from the sun, still wearing her fluffy carpet slippers that she ran out in this morning, and finally me. 

 

Outside the dilapidated hut an old man dressed as a cowboy sits on the grassy bank, I think he is the local pastor. Mum and Mme Maja pass by the large bolder outside the hut, under which the first child is buried. As soon as they are inside Mum starts to cry and wail. She has held herself together up to this point but now she let’s all the torment come out. I try to walk away but there is nowhere to walk to and both I and the cowboy man stare at the distant mountains. The powerful smell that has accompanied Sello’s disintegrating body over the last couple of months is everywhere, despite his absence. It was at the hospital, in the car and now even outside in the fresh air. There is no escape for any of us. 

 

Eventually mum spends her immediate anguish and comes out of the hut with Mme Maja. The next problem presents itself. The small hut is no longer the main homestead, the small breeze block building next door is, but the key has been lost during the flight to hospital last week. Mum finds a knife and the cowboy unscrews the door handle to no effect. I persuade him to use the knife to prise open the top window. I am the only one small enough to get through it and cowboy man holds the window open while mum give me a bunk up. 

 

Fortunately, I land on a plastic chair the other side. Now I am standing inside the locked room looking at the three others on the outside. “God will help” cowboy man assures me. God duly sends help in the form of Mme Maja carrying my tool bag from the car. It is passed through the window, and I extract a flat headed screwdriver, chip away at the mortar and prise the metal door frame wide enough so that the locked bolt has enough room to slide through. The door opens. There are three surprised faces the other side and I can’t resist a little “Da Da” at them causing a ripple of laughter. 

 

Mum thanks me for everything I have done, and I really don’t know what I have done. I have spent more time with Sello on home visits than any other child in Lesotho, but maybe all my efforts just caused Sello to suffer longer. What killed him in the end was the years of confinement in the hut and the resulting bed sores as mum hid him from the witches and tried to protect the family from the stigma of a child with cerebral palsy. Mme Maja tells me that at cerebral palsy clinic the previous week they had taken all the mums in the clinic into Sellos room to see what happens when you hide a child away and leave them in bed, not changing their position. Everyone was in shock and in tears as they see the terrible testament in front of them. Perhaps this is Sello’s ultimate legacy, and he will save other children from his fate in the future. I pray to God that I will never have to witness such torment again.

Blog 58: The workshop

In less than a year since it was first conceived, the dream of having a workshop at Abia High school has come true. It has surpassed my expectations. Since early in 2022 I have been talking to the British High Commission (BHC) about the possibility of a small grant to support the APT project. The grant was successfully applied for in the summer and supposed to start last September, but due to the uncertainty in British politics at that time the grant was frozen indefinitely. Our main funding partner, Glasswaters Foundation Canada, agreed to fund a workshop at the Abia if we could get the school to sign a legal contract agreeing to conditions of ownership and use. 

 

I had to jump through a series of increasingly difficult hoops to get the document signed, including a last-minute addition by the Chair of the school board to agree to abide by Catholic protocols. I have little idea what this meant, but an uncomfortable meeting with him where he launched into a strange diatribe about Islamists and gay people led me to decide not to air my opinion of live and let live. I tell staff just to be sensible, we are on land owned by the Catholic church and not do anything that might offend. 

 

After looking into the possibility of a container for a workshop it seemed far easier to build a tin shed, of which there are thousands of various sizes in Lesotho. It should have been straight forward, but the weather was terrible, also I wasn’t there most of the time to oversee building work, being either in Leribe, or the UK, and by the end of the year we ended up with a rather wonky tin shed, which only had a small capacity to store our equipment and room for a couple of people to work at a time. Then, without warning, in December, the BHC said the grant was now available, but the project still had to be finished by the end of March. 

 

As we had already built the tin shed, I asked if it would be okay to change the original proposal to building an outdoor training space. To be honest I’m not sure exactly what this would look like, except that we needed some sort of large area to train in. Also, if we could include wheelchair training in the proposal.  Donations from home brought in over 20 wheelchairs by the end of last year which needed maintaining, and most of the wheelchairs had been donated to students at Saint Angela who access mainstream schooling at Abia High and the adjacent Primary. The BHC agreed, but by the time I returned to Lesotho in January and with a commitment already been made to build a path to the disability toilets at the primary school (which UNICEF Lesotho had kindly built, but wheelchair students were unable to access) the timeline to complete the project and the six activities we had committed to, became squeezed into a period of about 8 weeks. 

 

The pressure is huge, and I soon realise I cannot be in two places at once and must leave the outreach work in Leribe for Mme Maja to take care of and base myself in Maseru. I am blessed by two events. Without warning a kind friend in the UK gives me a donation, the same amount as the BHC grant, to do what I will with. This immediately reduces the financial concerns of the cost of the building work because I know I’ve got it covered and we don’t have to end up with a compromise build not fit for purpose. I also find out that the APT trainer I know in Leribe, Mahlomola, is a good builder, and someone I can rely on to do a quality job. He comes to Maseru in the New Year to stay with a friend, build the pathway at the school, correct the problems of the tin shed and start on the workshop training area. 

 

By the end of January, Mahlomola has outstayed his friends welcome, and I find a guest house in Maseru that can accommodate us both and we can concentrate on getting the workshop ready for the training. Mahlomola is only a young guy, in his twenties, but a man of many talents and is tasked with building the workshop, as well as running the APT and wheelchair training. It’s a big ask and I nurture him with beer and take aways to keep him going, while running around doing numerous jobs to project manage and trying to keep the building supplies up to date for the ever-evolving workshop. 

 

As the building work goes on, we all put ideas in, a concrete slab needs shade and shelter, so a roof is built, then wooden planks put up on the sides to give some privacy, a water butt for water supplies, a place to store all the cardboard we use, a bench around the inside for seating, work tables for wheelchair users which can also accommodate people who can stand. The building looks like a barn has landed in Lesotho but is a completely unique and disability friendly space which can be adapted for any of our training needs and even be a sports area for the kids. The weather is stormy, electricity supplies erratic, the man that Mahlomola has hired to help him, worse than useless, and the building completion date goes down to the wire. 

 

Hours before the APT course starts Mahlomola is still finishing the benches and we are madly painting the floor, even our accountant joins in with the last-minute rush. While the final finishing touches are still needed, the workshop training area is ready to run the APT training and wheelchair courses. It comes into its own. It. Is. Glorious!  Five teachers, 10 students, 5 with disabilities, split into 5 mixed groups and each produce an APT chair for a child who needs supportive seating. 

 

The two high school teachers join our technician for wheelchair training, repair chairs, adjust chairs, redesign them, take them apart, weld them and on the last morning we go to Saint Angela to do some basic skills with the children. Somehow in-between the two courses I go with Mahlomola to bring 5 more new wheelchairs in from South Africa and tools for the wheelchair training including a welding machine. It’s all covered by donations and after a heart stopping moment on the border, when we discover the customs official has made a typo on paperwork and the car registration is wrong, we finally cross on the second attempt. 

 

When I look back over the last two months I can’t believe what we have achieved. Not all the activities for the project are finished yet. We have a visit from the BHC on March 15^th and I must still write the project report for the BHC by April. It is a retrospective grant which currently Glasswaters has paid for, so I must produce the evidence that we have done the project and what it cost. It’s not over but I hope by April the stress will be significantly less, maybe I will get a full night’s sleep, maybe even have a day off!

 

I cannot thank Ntate Mahlomola, POP staff, Abia High school teachers, friends, Glasswaters, the BHC and everyone who has supported the project, enough. We now have this amazing workshop that will benefit children with disabilities for years to come and the beginning of a skills base to draw on to sustain the work. Thank you, Thank you, Thank you. 

Please click on the links to view You Tube videos

Abia APT centre

 

https://www.youtube.com/watch?v=z-TLL9yP1LM&t=1s

 

  

POP Wheelchair training 

 

https://www.youtube.com/watch?v=4h5PTJCWNlg

 

Blog 57: Hope

I fly into Maseru late Sunday afternoon, back from a brief sojourn in the UK catching up with family and friends after being away for a year. Its summer in Lesotho and the relentless heat is even more noticeable having jumped straight from a Norther hemisphere winter into Southern hemisphere summer, courtesy of a long-haul flight. 

We have a staff meeting first thing on Monday morning using the new workshop at Abia High School, completed at the end of last year thanks to funding by Glasswaters Foundation Canada. It’s a tight squeeze as it contains all our APT materials, 4 half-finished chairs and 24 bags of cement ready to start building an attached outdoor space. This space will be used for a working area and for training staff and students to help us make the cardboard chairs. The funding for it comes from a retrospective grant from the British High Commission (BHC) for a sustainable project for assistive technology. This project was supposed to start last September, but due to the uncertainty in British politics at that time the grant was frozen, and we didn’t get the go ahead until December 20^th. With Christmas getting in the way and a commitment to build a pathway at the primary at the beginning of the year, we effectively now only have 8 weeks until the deadline of March 15^th to complete all six project activities we pledged to in our grant bid.

 

Due to the BHC budget year there is no flex on this and to do all the project activities within the time scale is very difficult without the use of Harry Potters time turner. I don’t have one so I ask Selemela Network whether they can do two of the activities, the disability awareness training at the primary and high school for staff and pupils. As they have done this type of training before and have a man on their team with cerebral palsy who uses a wheelchair, they should be able to offer a more credible and better-quality package than we can. I have email exchanges and several anxious phone calls with them trying to establish whether they can deliver the deliverables which I have asked for within the time frame. I also have a long call with the BHC on due diligence which gives me more work and stress on top of everything else I must attend to.

 

All the other ongoing projects we are involved in must continue. The team have done a great job on the pathway at the primary school, which finally gives wheelchair access to the new girls’ disability toilets, which unfortunately no one had thought about when the toilets were originally built last year. Before we built the pathway the girls using wheelchairs had to go all the way back to Saint Angela’s to use the toilet. Even with someone pushing them this probably takes at least 15 minutes one way, so a half hour round trip of time taken out of lessons. Using the new path to the new toilets probably only takes 5 mins, and the path provides easy access for a child who can self-propel to go the toilet independently. As the path is over 50 metres long it took a lot of cement and time to build, the heat and thunderstorms added to our original estimates of time and cost. The outcomes have been worth it but have squeezed the available time for the BHC project. 

 

While we are over at the primary inspecting the path the kids rock up for the first fitness session of the year. They are bouncing around on the floor with their usual energy and I spot a new face amongst the crowd, and she gives me a brilliant smile. She comes over to see me, standing upright by walking her hands up her wasted legs (Gowers sign) and my heart sinks. It sinks even further as she walks by holding the back of her head up with one hand, while supporting her twisted spine by using the other hand in the small of her back. She is 17 and tells me the history of her problems in quiet well-spoken English. She thinks she might have polio, but I know almost certainly she has one of the many types of progressive Muscular Dystrophy. 

 

There is little I can do for her; it is such a cruel condition. I get her to try out a wheelchair to see if she finds it easier to use than walking. She says it’s okay, but with a determined glint in her eye says she would rather walk. I agree with her decision, she will stay stronger for longer, even though she will inevitably end up in a wheelchair. She moves off holding her spine and head upright as best she can. Her body might be weak, but her spirit is strong. Tears prick my eyes at such bravery in the face of adversity.

 

I go across to Saint Angela to shoot the breeze with the Old Nun. She has got a name, but her age gives her the title by which she is known. The Troublesome Nun and former manager has now left, hurray! The new manager is Sister Regina, and the Old Nun is charge in Sister Regina’s absence. The Old Nun is busy filling bottles with a bright green liquid for her arthritis, which she offers me a taste of, assuring me is made from pure prickly pear. It tastes like soap, and I nearly spit it out all over her. She asks for new tips for the crutches which I gave to her before Christmas. I supply her with some, happy to grease the wheels of our connection, and hoping that a new manager could be the start of more a more positive relationship with Saint Angela.

 

The following day I check in with the new cerebral palsy clinic at Q2 hospital and measure up some of the kids for APT chairs, ably assisted by one of the physios at the hospital who is very enthusiastic and keen to get involved with the APT project. They have no equipment at the hospital to assist patients and he instantly understands the benefits of using recycled cardboard to make supportive seats for the children. I have now met three physiotherapists in Lesotho, attached to government hospitals, trying their best with very little. Amazing how much potential some cardboard could have in transforming their work. 

 

I go to the scrap yard with Ntseliseng to source more boxes while calling the lawyer to talk about “Articles of Incorporation” for a non-profit making company. My eyes glaze over as I watch the cardboard being weighed and the lawyer talks about company law in Lesotho. Up to now I have been blissfully unaware of such things, and I would have chosen for it to remain this way if it were only possible. Its definitively time to go back to Leribe and catch up with the families and children the outreach work I haven’t seen since the beginning of December. Most importantly the boy with horrifying pressures sores. 

 

Mme Maja has sent me pictures of his sores and they look even worse than when I left. It’s a wonder he is still alive, and he must be in terrible pain. I try to source something stronger than Panadol, but only find Tramadol, which although a strong pain killer is also a respiratory suppressant, so very dangerous for him in his current condition. First thing in the morning I go to see a private doctor who Mme Maja has taken the boy to see while I was away. The doctor sees me immediately. He is a slim man dressed in a grey thobe and kufi cap. He is so quietly spoken I practically have to sit on his lap to hear what he says.  

 

He takes his time, patiently giving me lots of good medical advice about tending for the boy. Seeing my despair says we must not give up hope, we can only do our best and trust in God. He gives me another course of antibiotics for the boy as well as omeprazole, bandages, gauze, sterile water, and a box of plastic gloves. He advises me to go in search of CBD oil for pain relief and source more food to support a protein rich diet. He charges me nothing for his time, or any of the supplies he has given me, and floats out of the room to see his next patient. Truly I have been in the presence of a good man. 

 

We track down the CBD oil, which costs the equivalent of its weight in gold, ironic since cannabis grows everywhere here. I decide its worth it and purchase a small bottle. Armed with this, plus all our other medical supplies, and a whole load of peanut butter, bananas, milk, yogurt, Weetabix we go to visit him. His wounds are cleaner but also bigger, if he recovers, he will need skin grafts to cover them. The sores are so deep his bones are exposed. He is 16 and probably doesn’t weigh much more than 16 kilos. We clean the wounds with salt water and sit him up in the camp chair and pillows I have brought him with donations. Finally comfortable he stops screaming from the agony we have just put him through and he fixes me with his knowing brown eyes. 

 

While he is being fed the mix of foods we have just brought him I stare back. The hold on life this boy has is a miracle, surely most people would either be in a coma or dead by now. When Mme Maja sent me the last set of pictures, I thought all hope was lost but the boys spirit shines light in the darkness. His essence and tenacity to hang on to life, where most would have fallen, radiate courage and hope. As the kind doctor said we must not give up hope. The sun never quits shinning. Sometimes clouds just get in the way… 

 

Blog 56: An Unforgettable Year

 Some of the mums with children with cerebral palsy who live in Leribe have gathered for a meeting and they invite to join them after it's finished. They have a small presentation for me and give me a traditional hat, printed cloth and a “magic” mug that revels a message of thanks once hot water is poured into it. Their gifts and their appreciation mean a lot when they have so little. The outreach in Leribe has been one of the highlights of my year, it’s the work I really wanted to do in Lesotho, reaching out to children with disabilities in the most rural areas and training and supporting their parents and care givers at home. 

 

In the last 5 months in the districts of Leribe and Buthe with Mme Maja I have visited over 90 families, assessed their children and carried out over 100 follow up visits. Alone these numbers are meaningless, they say nothing about what took place during these visits, what I’ve experienced and what these families endure. I have seen terrible neglect and starvation, pressure sores so deep I can see the underlying bone, body’s distorted into impossible angles by contractures and dislocated joints, families living in despair, poverty, and hardship. Parents trying to protect their children from their suffering by using charms to ward off curses and witchcraft, but helpless in the face of all the adversities that surround them. 

 

Despite all these horrors and the frustrations of dealing with a destitute health and social service, these memories are balanced by more positive experiences of my year in Lesotho. I can reflect on the hope and smiles of the children, the exceptional care and dedication of most parents and grandparents in depleted circumstances, their willingness to learn and do better for their children, their gratitude for advice and the assistive equipment which has been given out. When I look back, I remember children who have walked, children who have sat up, children who have been taken outside from the darkness and into the sunshine, children who have reached their next milestone and are living their best life within the limited resources that are available. 

 

With very little I feel we have been able to do a lot. Education, advice, and support can achieve wonderful things for a family living in isolation with a child with severe disabilities. Together with my co-workers I have learnt how to make cardboard furniture and supply children with supportive seating to sit up and join in family life, socialise, and improve postural control. Where I have found equipment, I have repaired it, and redistributed to children that it fits. With kind donations from the folks back home I have been able to buy 21 brand new wheelchairs which have given children greater mobility and independence. Most of these wheelchairs have gone to children accessing mainstream education in Maseru, but three went to children in Leribe who were living their lives indoors, because they were too big to be carried outside. With their new wheelchair their horizons have expanded, and quality of life greatly improved.

 

The new wheelchairs have released additional wheelchairs that could be repaired and be given to other children. A four-year-old with hydrocephalus, autism, and self-abuse, hitting himself over the head, was given one of these repaired wheelchairs. Looked after his grandparents he was unable to sit up without being held by them and had to constantly be restrained from hitting himself. Daily life was draining for everyone. He instantly loved the wheelchair that he was given. Now he can sit up all day, he is much calmer and a lose scarf tied at the elbow stops him harming himself when he feels the urge. Granny greets us with a smile, now she can move him around easily and get on with the household chores. It’s been life changing for her and the boy.

 

I could describe many such stories, the boy with a severe brain injury from a road traffic accident who had been left lying on a mattress for the last ten years because his parents have been unable to sit him up. After being given a cardboard chair, he can at last sit in the kitchen with his family and be part of their life; the orphaned boy with severe contractures, left in a cold, dark back room on a urine soaked mattress by his granny, brought into the sunny front room by rearranging the furniture and educating granny how she could meet his needs better; the boy who has been unable to walk for 6 years due to having no kneecap and bilateral talipes, who learnt to walk within a couple of weeks after being given a pair of crutches, For the first time in his life is able to go out and play with his mates, daily miracles that I have been privileged of being part of. 

 

The project goes from strength to strength. In Maseru we support over 40 children with disabilities at the local mainstream primary and secondary schools.  We have carried out regular exercise and sport sessions at the primary school to improve fitness and mobility. At the high school we have carried out ground improvements for children using wheelchairs accessing mainstream education. Hopefully by the end of the year we will complete a workshop for APT production, training, and the repair of wheelchairs. Fifteen of the new wheelchairs went to children at these two schools and we need to provide the best environment as we can for the wheelchairs to continue to serve the children as well as possible. 

 

With Malamuele Onward we have just instigated a carer 2 carer cerebral palsy clinic at Q2 hospital in Maseru which will provide invaluable support and education for families. Next year looks like it will be a very exciting time to build on all the opportunities that have arisen and so as 2022 draws to a close I wish to thank all the people who have supported the project and made so many things possible. 

 

Firstly, Glasswaters foundation Canada who paid my expenses to come out here, accommodation and milage costs for the project, 4 salaried workers, APT expenses, the building of the workshop, and a host of other expenses the project needs to sustain it. The project might be small, but Glasswaters funding have helped it have a big impact and enabled it to reach out to hundreds of children with disabilities and their families. 

 

I would like to thank my talented co-workers, who can just as readily make cement for ramps, as glue for APT chairs.  Without their help, guidance, and local knowledge, I would never have found the families, or been able to communicate with them. Working together the project has now been able to assess and follow up children in four districts in Lesotho, train care givers and provide the APT furniture that these children desperately need.

 

I would like to thank all the folks back home who have raised thousands of pounds through the Aberdyfi rock shop, or given generous donations which have been used to buy 21 new wheelchairs (actually 24 because I have ordered 3 more wheelchairs to be collected at the beginning of next year), a bunch of crutches, tools, medical supplies, and some expensive repairs to the car which has suffered mightily after a year of outreach work and off road terrain, with even the regular tarmac roads covered in lethal potholes. 

 

The amazing thing about all these donations is that I haven’t even asked, they’ve just been given, and whenever I’ve needed extra money to support the children it’s been there. I would also like to thank those friends who’ve been there for a friendly chat, message, or email in times of need and despair. Sometimes all you need is a kind word and some encouragement to gain a better perspective when it’s been a tough day. 

 

Soon I will be flying back to the UK for a few weeks and will return mid-January to continue onwards and hopefully upwards. It’s been an unforgettable year, but it’s only the tip of the iceberg of the work that needs doing here for children with disabilities. I count myself very lucky that I’ve been able to make a positive contribution and for all the support given by you kind folks. Many thanks for everything, much love Jan 

 

 

Blog 55: A small victory ?

 It's Monday morning and we are visiting the boy with the terrible pressure sores who has returned from hospital (blog 54). I have brought him blankets, clothes and bandages using money I have been given in donations. The mother proudly displays her handiwork in dressing his wounds. She has used sticky plaster to hold the bandages together but unfortunately has also stuck it down to his bare fragile skin. It takes twenty minutes of the boy screaming for us to remove the plasters so we can examine the wounds. They look about the same as they did a week ago when we took him to hospital, but he seems better in himself now he is on a course of antibiotics. 

 

We dress the wounds, position him as best we can, and leave for our next visit. A few days later we return and examine the wounds again, they are very deep, some of them down to the bone, and they are not drying out. We decide not to dress the wounds and leave them exposed, covering him with a sheet to keep the flies off. The boy is emaciated, and I find out that the family only has sorghum to eat, so it’s little wonder his body doesn’t have the resources for him to heal. It doesn’t help that the water source is miles away, so supplies for cooking and washing are limited. We go up the road to the nearest small shop and I get some UHT milk, Weetabix and some tins of corn beef and peas for him. At least he now has some protein, which is soft and easy for him to eat and may help his body to start to heal. 

 

Before we leave Mme Maja tells mum to remove the traditional medicine charms from around the boys neck, which are cutting into his skin. I would never dare to ask such a thing, but Mme Maja has had enough of the whole witchcraft thing and is giving mum short shrift. Mum looks scared and says that the boy’s aunty gave them to him, a traditional medicine woman. In the end it appears Mme Maja is even scarier than aunty and mum removes the charms reluctantly. 

 

On Saturday I go to Phelisanong children’s centre to take a boy I know there a wheelchair. We go back to my first visit to Lesotho to work with children with disabilities in 2016 (Blog 8 No Happy Endings). He has been through a lot and risen above it all to go to mainstream schooling. He still lives at Phelisanong and has messaged me several times to ask when I will visit. Finally, the time came a few weeks ago and I found that he has turned from the small 8-year-old boy I first met into a fine young man. His voice has broken, and he is now at secondary school. 

 

His smile and enthusiasm still define him despite the huge broken wheelchair he is tying to get about in. I immediately put him on the list of children that I am buying new wheelchairs for in South Africa the following week. Now he climbs into it and its fits him well, he is comfortable and better than that for a young man, it goes fast and gives him new independence. He no longer has to rely on others all the time to push him and he is made up. He spins on the spot, zooms up and down the path before disappearing to do a lap of the centre. I drive back home with a small glow inside me as I nostalgically flick back through the years and everything that has happened since I first met him six years ago.   

 

Now its Monday morning again and we are back bringing more supplies to the boy with pressure sores, huge cabbages, more tins of corn beef, milk, soap, nappies. Mum tells Mme Maja she spoken to the village counsellor and hopes to get some food supplies from the ministry of social development. She then drops the bomb shell. She has also spoken to aunty and told her she has removed the boy’s charms. Aunty has said she wants to see us (yikes I will be right behind Mme Maja on that occasion) but also that she is going to buy the family cement so they can finish the building that they are working on and bring the boy out of the hut to give him more room. 

 

I am astounded. Cement and more living space are definitely of more practical help for the boy then a bunch of charms. I wonder is this represents a small victory over the witches. (See blog 42 Battle with the witches) I’ll definitely take it but we still have to meet aunty and I’m sure she’ll have something to say on the matter.